HIV Profile: Ryan White

By Justin B. Terry-Smith

July 20, 2011

Justin will regularly profile someone famous or well known who has either been infected with or affected by HIV/AIDS. This is his choice for July.

Ryan White was born on December 6, 1971 in Kokomo, Indiana. When he was three days old, doctors informed his parents that he had hemophilia, an inherited disease in which the blood does not clot. People who have this disease are vulnerable, since an injury as simple as a paper cut can lead to dangerous bleeding. Fortunately for White and his parents, a new treatment, called Factor VIII, recently had been approved by the U.S. Food and Drug Administration. This treatment is made from blood and contains the clotting agent that allows healthy people to heal quickly from wounds.

In December 1984, when he was 13, White contracted pneumonia and had surgery to remove part of his left lung. After two hours of surgery, his doctors told his parents that he had contracted the incurable disease of Acquired Immunodeficiency Syndrome, or AIDS, through his Factor VIII blood transfusions.

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White's doctors told him that he had six months to live, but White decided that he would continue to live a normal life, attend school, and spend time with his friends.

White had not counted on the ignorance, fear, and hatred he would encounter in his small home town of Kokomo, Indiana. At first, people there claimed that there were no health guidelines for a person with AIDS to attend a normal school. Even after the Indiana State Board of Health set guidelines saying it would be safe for the other children if White attended school, the school board, his teachers, and the principal tried to keep him out of school. They feared he would spread the disease, even though it was known by that time that AIDS cannot be spread by casual contact. White and his mother took the case to court. Eventually they agreed to meet some of their neighbors' concerns by having White use a separate restroom, not take gym class, drink out of a separate water fountain, and use disposable eating utensils and trays at lunch. Even so, 20 students were pulled out of school by their parents, who started their own school to keep their children from having any contact with White.

That his townspeople's ignorance and fear regarding AIDS led him to become the target of jokes and some spread lies about him biting people, spitting on vegetables and cookies (and thus supposedly spreading the disease), restaurants throwing away dishes he had eaten from and students vandalizing his locker and writing obscenities and anti-gay slurs (because at that time, AIDS was believed to be a disease primarily of gay men) on his books and folders. An even more frightening incident occurred when someone fired a bullet into White's home.

He received thousands of letters supporting his right to go to school, and met politicians, movie stars, and top athletes, all of whom supported him. He appeared on numerous television programs, including CBS Morning News, the Today Show, Sally Jessy Raphael, Phil Donohue, Hour Magazine, the Home Show, Peter Jennings' "Person of the Week," Nightline, West 57th Street, P.M. Magazine, Entertainment Tonight, and Prime Time Live. White was also featured on the cover of the Saturday Evening Post, Picture Week, and People magazines. There was also an ABC movie, The Ryan White Story, was made about his life. Ryan acted in the movie, playing his best friend, Chad. And Judith Light played his mother.

In 1987, using the money from the movie, White's family moved to Cicero, Indiana, where they found acceptance.

White died on April 8, 1990 in Cicero, Indiana. During his short 18-year life he accomplished more than many people who live long, healthy lives. His activism and legacy of concern for others with AIDS remains. Shortly after his death, White's mother went to Congress to speak to politicians on behalf of people with AIDS. White's activism, and that of his mother Jeanne, helped AIDS patients all over the United States receive care that they otherwise could not have afforded. The public was also educated about the nature of the disease.

Just a few months after White's death, Congress passed P.L. 101-381, the Ryan White Comprehensive AIDS Resources Emergency Care (CARE) Act. The Act is administered by the Health Resources and Services Administration and aims to improve the quality of care for low-income or uninsured individuals and families with HIV and AIDS who do not have access to care. The Act supports locally developed care systems and is founded on partnership between the U.S. federal government, states, and local communities. It emphasizes outpatient, primary, and preventive care in order to prevent overuse of expensive emergency room and inpatient facilities.

Between the Act's authorization in 1991, and May of 1996, nearly $2.8 billion in federal funds were appropriated to provide care to more than 500,000 low-income Americans living with HIV or AIDS. From 1993 to 1996, funding for the program increased from $348 million to $738.5 million. The Act was reauthorized in May 1996 and continues to provide care to Americans living with HIV and AIDS.

Quotes From Ryan White

"A bleed occurs from a broken blood vessel or vein. The blood then had nowhere to go so it would swell up in a joint. You could compare it to trying to pour a quart of milk into a pint-sized container of milk."

"I spent Christmas and the next thirty days in the hospital," White told the President's Commission on AIDS. "A lot of my time was spent searching, thinking and planning my life. I came face to face with death at 13 years old."

"I was labeled a troublemaker, my mom an unfit mother and I was not welcome anywhere. People would get up and leave so they would not have to sit anywhere near me. Even at church, people would not shake my hand."

Addressing his new school: "For the first time in three years," Ryan told the Commission, "we feel we have a home, a supportive school, and lots of friends. ... I am a normal, happy teenager again. I have a learner's permit. I attend sports functions and dances. My studies are important to me. I made the honor roll just recently, with two As and two Bs. ... I believe in myself as I look forward to graduating from Hamilton Heights High School in 1991."

"I've seen how people with HIV/AIDS are treated and I don't want others to be treated like I was."

End Quote

"I had plenty of time back then to think about why people were being mean. Of course it was because they were scared. Maybe it was because I wasn't that different from everybody else. I wasn't gay; I wasn't into drugs; I was just another kid from Kokomo. ... I didn't even look sick. Maybe that made me more of a goblin to some people."

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Justin B. Terry-Smith, M.P.H., may be one of the most public African Americans living with HIV: He has his own website, and he's even on YouTube. He is a noted HIV and gay civil rights activist and the creator of "Justin's HIV Journal," a popular blog in which he shares his trials and tribulations of living with HIV. A U.S. Air Force veteran, Justin resides in Laurel, Maryland, with his husband, Dr. Philip Terry-Smith, and their son, Lundyn. Presently, Justin is working toward earning his doctorate in public health. He welcomes your questions.
(Photo credit: Don Harris)

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